Sussan Ley received a letter on December 23 from a victim of one of Australia's worst health scandals

Joanne McCarthy10 Jan 2017, 3:30 p.m.

Sussan Ley, the letter, and the health scandal victim who won't give up.

Sussan Ley challenged on ‘morals’

No apology: Sussan Ley speaks to the media after revelations about her travel entitlements. Furious victims of one of Australia's worst health scandals say Ms Ley, who stood aside as health minister while her travel claims are investigated, say she refused to respond to their calls for a 2005 Senate inquiry's recommendations to be acted on.

Angry: Dora Creek man Charles MacKenzie says the Australian Government's failure to acknowledge responsibility for one of the country's worst health scandals has nearly broken him.

Determined: Medical Error Action Group founder Lorraine Long has backed the "tainted blood" victims since the scandal was exposed nearly two decades ago.

A VICTIM of one of Australia’s worst health scandals wrote a furious letter on December 23 to the then federal Health Minister Sussan Ley on behalf of thousands of other victims, that ended with the line: “It’s our morals versus yours. What’s it going to be, minister?”

In England, Scotland and Ireland in the past two years governments have apologised and agreed to compensate people who contracted hepatitis C after blood transfusions in the 1980s and 1990s, from donors known to have had the life-threatening virus.

Many of the victims were women receiving blood transfusions after childbirth.

In Australia Ms Ley did not respond to invitations to meet Dora Creek hepatitis C victim Charles MacKenzie and Medical Error Action Group campaigner Lorraine Long. She did not respond to repeated requests since 2015 for the Federal Government to act on Senate inquiry recommendations in 2005 for a formal apology to victims, a financial fund and “case managed” support for people affected.

On December 23 Mr MacKenzie and Ms Long wrote: “Here we have Australia’s health minister who refuses to apologise to victims of the blood scandal. The problem is there’s been a whole line of you.

“Australia remains not big enough or decent enough to acknowledge the harm it has caused. As minister for health it’s your duty to serve the public by addressing this matter wholly, fully and decently.”

In their parting line they told Ms Ley: “It is not our job to be driving this matter or apologising either, it’s yours, so let’s cut to the chase: it’s our morals versus yours. What’s it going to be, minister?”

On Monday, only minutes after Ms Ley announced she was standing aside for investigations into her use of travel entitlements, including controversial taxpayer-funded trips she made to the Gold Coast, Mr MacKenzie revealed that Ms Ley’s lack of response had “nearly beaten me” after 20 years fighting the Australian Government on the issue.

“Very rarely does something get to me but Sussan Ley did. I’ve dealt with all the health ministers over the years, but Sussan Ley denied the issues we raised and made proud boasts about what the government had done. Then she’s caught on travel entitlements and asking for forgiveness for her political life,” Mr MacKenzie said.

In March, 2015 the then prime minister David Cameron told the UK Parliament: “It is difficult to imagine the feelings of unfairness that people must feel at being infected by something like hepatitis C or HIV as a result of a totally unrelated treatment, and to each and every one of those people, I would like to say sorry on behalf of the government for something that should not have happened.”

In Scotland the government agreed to pay immediate compensation payments to victims, with lifetime pensions.

On the back of the apologies Mr MacKenzie and Ms Long wrote to the then Australian prime minister Tony Abbott, asking what had happened to the Australian response.

The letter was referred to Ms Ley who responded in September, 2015 that: “I am deeply sorry to learn of the personal and physical suffering experienced by those who acquired hepatitis C from blood transfusions”, and the government acknowledged “the significant burden of this disease including the stigma”.

Her office did not answer subsequent questions about an apology, and whether the government had contacted all “tainted blood” victims through the Australian Red Cross Blood Service’s Lookback program, how much the program cost the government, and how many victims had been contacted.

In April, 2016, in response to further requests from Mr MacKenzie and Ms Long to Ms Ley for the government to act on the Senate inquiry recommendations, a federal Department of Health assistant secretary responded on the minister’s behalf, noting the government would spend more than $1 billion on new hepatitis C treatment drugs after listing them on the Pharmaceutical Benefits Scheme.

“Without PBS listing, these medicines could cost patients up to $100,000 in out of pocket costs for a single course of treatment. As you would appreciate, this is a huge step towards greatly reducing the impacts of a major blood-borne disease, which currently affects Australians,” the assistant secretary wrote.

In a scathing response to the assistant secretary Ms Long wrote: “Is this something to be proud of decades later? It should not be costing one tainted blood victim a single cent. They are already infected, broke, dying or dead, and their families destroyed with them, and you’re expecting their gratitude for this miserly gesture?”

Mr MacKenzie was 16 in 1989 when he was given a contaminated blood transfusion. The blood platelets that kept him alive as he battled life-threatening severe aplastic anaemia, also infected him with life-threatening hepatitis C.

Up to 20,000 other Australians – including babies, children, women after childbirth and haemophiliacs – are believed to have received “tainted blood” transfusions in the 1980s and early 1990s, in what has been described as a human health disaster and global scandal.

An unknown number developed, or could develop, serious liver disease, liver failure or liver cancer, at a rate “generally much higher” than people who contract the condition by other means, primarily illicit drug use, a Senate inquiry in 2004 was told.

In a letter to Ms Ley in October, 2015 Ms Long said a formal apology was necessary because not only had the government failed tainted blood victims by allowing them to be infected, but thousands of victims were denied early treatment because the Lookback program failed to identify and notify them.

“There is no point apologising just to the Medical Error Action Group. We cannot pass the apology on to the thousands,” Ms Long wrote.

Mr MacKenzie said it was too late for far too many Australians who had died from the consequences of the tainted blood scandal, but an apology remained necessary because surviving victims needed to hear, in public, that the government accepted responsibility for what had happened.

“We are talking about innocent people given blood contaminated with hepatitis C. It came from the Australian Red Cross Blood Service. They didn’t acquire it grocery shopping,” Mr MacKenzie said.